Experimental surgery at Children's Hospital gives girl life

Spend a day with Alexa Rand, and you'd never know all she's been through.

"Am I allowed to do cartwheels?" she asked her doctor Tuesday at Boston Children's Hospital.

The 9-year-old is a spitfire who owns a room within minutes. She's a ball of energy, involved in just about every extracurricular opportunity her school in Long Island, N.Y., provides.

"She amazes me," her dad Jamie told NewsCenter 5.

But it hasn't always been so easy for Alexa. She is equipped with a specially-designed pacemaker for a rare heart defect -- discovered before she was born.

Jamie and his wife, Rosamaria, were told in 2003 that Alexa, still in utero, had hypoplastic left heart syndrome, a rare condition that causes a portion of the heart to underdevelop.

At the time, it was often fatal.

"They hit you with the numbers, and you're just flabbergasted, because none of them were over 25 percent," Jamie said.

The Rands decided to travel from New York to Boston Children's Hospital, where heart surgeons were performing a new, experimental operation.

"They had to actually open me up while the baby was in there," Rosamaria said.

Doctors, in other words, would operate on Alexa in utero. They delicately inserted a line through the amniotic sac and into Alexa's heart. They used the line to pump up the deflated ventricle with a balloon -- only the 16th time it had ever been done at that point.

And Alexa was only the third infant in the world to survive it.

"By just opening that up, enough blood flow got in there, and the heart started to open," said Children's Hospital cardiologist Dr. Frank Cecchin.

Alexa is now nine, but life has been a struggle since then. She has had dozens of operations over the years. Her heart failed in 2007, and she very nearly died. In fact, she has faced death several times, and now has a pacemaker that keeps her heart in rhythm.

And she's still not out of the woods.

"It's going to have to be monitored because there is a little bit of obstruction under the valve," Dr. Cecchin said.

But for now, he said Alexa's heart is mostly healthy. And she can expect to live a full life.